Touched by Lyme

TOUCHED BY LYME: Helpful book about everything to do with PICC lines now available free on the internet

(Book review) INFUSING FOR LYMIES: A step-by-step guide with money-saving tips for buying and infusing IV medications, maintaining a PICC line, minimizing the herx reaction, insurance denials and more. (Note: this blog has been updated with new information as of Jan. 25.)

Links to this gem of an e-book showed up on a few on-line Lyme support groups this week, and pretty much “went viral” in the Lyme community. Linda Slocum, its author, told me INFUSING FOR LYMIES had clocked 2400+ unique visitors within a few days. I’m sure it’s much higher now.

It’s the most helpful PICC-line information for Lyme patients I’ve ever seen. When my family went through this a few years ago, the best we came up with was a handful of photocopied pages from the infusion company. I don’t think the situation has changed much in the meantime, until now.

INFUSING FOR LYMIES is a 58-page e-book, available for free on a website called Issuu.com. You can read it on-line at the website, download it to keep your own copy on your computer, and print all or part of it in hard copy, if you prefer. (Click here to see the book.)

It’s the work of a southern California Lyme patient who has been undergoing IV treatment for about a year now, and passes on her hard-earned lessons as a gift to the Lyme community. The information is useful on a variety of levels.

The book does a very good job of explaining the steps of getting a PICC line, how to keep it clean and dry, etc. But what’s really remarkable about INFUSING FOR LYMIES is Slocum’s explanations of how to save money and still get the care you need.

Many Lyme patients may start out using an infusion pharmacy and a home health nurse, which is certainly the easiest way to do it. However, once insurance coverage runs out (oh, and it will), the expense of such services can quickly get out of hand. When you read INFUSION FOR LYMIES on-line, you are provided with clickable links to the least expensive source of generic Rocephin (Walgreen’s pharmacy), saline bags (Drugs Depot) and other needed supplies (Infuserve America). (The beauty of the on-line book is that the author can update the material easily, so readers can always get the latest information.)

Getting low-cost supplies is only part of the challenge. Figuring out what to do with them is next. She walks you through the steps, with clear explanations about how to mix the medications, set up your IV pole, and infuse. Instead of being overwhelming, it all seems, well, manageable.

The author recommends sharing this e-book with your doctor, to confirm that the instructions for mixing and infusing medications are in line with the way he or she wants you to do it.

There’s also lots of useful information for Lyme patients who aren’t using a PICC: clickable links to Lyme information resources, helpful advice about managing Herxheimer reactions and detoxification, and dealing with insurance denials.

INFUSING FOR LYMIESis truly a gift to the Lyme community. Thank you, Linda.

Update from author of book, as of Jan. 25:UPDATES have been posted to the sections on buying medications from the pharmacy, and pharmacy discount cards.

Apparently not all are having success with their local Walgreens for ordering. DO NOT attempt to order via their 800# or their infusion service, those are not the same thing.

If Walgreens pricing is not available to you for some reason, then order from the secondary pharmacy in the ebook, or try your local pharmacy to see if they can get low pricing for you. Costco and other large pharmacies have been known to carry low-cost rocephin as well, but not all of them will order for you.

Each pharmacy, whether Walgreens, Costco or other, has some degree of independence, so not all will be the same in their ordering and pricing.

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2 Comments

Been dealing with cronic lyme dtease for at least 2yrs.Finally came out this past Aug. My doctor is gonna try a Picc line. Hear the pros and cons about this. Not sure what to except. But what else can I do because no places around me except insurance. So was very happy when my insurance was gonna try this. Because most of my opptions were to spend $1000’s or more out of my pocket to do this from out of state doctors that don’t except any insurance. The point is! Where can I get helpful info on the Picc line use and maintance of having it? Thanks for any info if you can. Shane

I don’t know if this appears in your book or blog. I recieved IV treatment through my insurance company for 7 months. It was fully covered by medical insurance. They then decided they would not cover it anymore. My Dr. recommended that I check and see if the rocephin was covered by my prescription drug program which is was. However I did have to pay for the sterile water and all supplies needed to mix the med myself i.e. syringes, needles etc. I also purchased the supplies need for the weekly dressing changes for the picc line. Everything is available you just have to learn how to do it yourself. It was still costly (prob around $500 a month or so) but I was able to remain on the drug for another 15 months. Hope this helps someone.